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On Report the Minister suggested that, because an infant or child below the age of consent was incapable of giving valid consent, this would not be a possible form of research. If that argument were pursued to its logical conclusion, it would make the practice of paediatric medicine virtually impossible because, for diagnostic procedures and treatment to be given to young infants and children, parental approval is necessary. The General Medical Council and the BMA in its handbook, Medical Ethics Today, have made clear the carefully defined circumstances in which research involving children with explicit parental consent is feasible. For that reason it is crucial that this amendment or something very like it should go in the Bill to enable such diagnostic work on infants to be carried out. In the case of the muscular dystrophy patient, if you can diagnose the condition at birth, it would not be impossible to take a tiny sample of skin to create an admixed embryo and a stem cell development of muscle cells to treat the condition. This kind of research is at the cutting edge and must be pursued.
Baroness Royall of Blaisdon: My Lords, the Bill sets out a framework where to use a persons gametes or other cells in the production of an embryo or a human admixed embryo there must be effective consent from that person in place. Consent, as noble Lords have said, is one of the cornerstones of the 1990 Act and only with the strongest of justifications would we be able to consider exceptions to this important rule. This is particularly true because of the human rights considerations. It is important to have regard to someones personal autonomy when their cells would be unknowingly used for embryo and human admixed embryo research. It has been made very clear that there is concern that without any exceptions there could be a serious adverse impact on scientific research. The research affected could be important research aiming to better understand and treat serious medical conditions. On Report we gave a clear commitment to take away this issue for further consideration. We are grateful for the very helpful discussions on this issue that we have had with noble Lords. My noble friend Lord Darzi wrote a lengthy letter to set out the legal issues and to reiterate our intention to consider this issue further with a view to resolving it in another place. Copies of that letter
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Regarding the use of cell lines, a compelling case has been made. We have outlined in writing to noble Lords that the Government take the view that it will be possible to make an exception to the requirement for express consent, provided that sufficiently stringent safeguards are in place. The details of those safeguards will require significant further consideration and discussion to ensure that research takes place only where to require consent would impose a substantial burden on scientific research, with such research being in the public interest. We will also need to develop a framework through which the safeguards will be introduced. My noble friend Lord Turnberg mentioned the importance of external scrutiny and I am sure that we will be looking at examples such as the patient advisory group that he mentioned.
Regarding the use of a childs tissue, we agreed that in some circumstances, particularly those where a child is suffering from a terminal illness at a very early age, the current consent requirements in the Bill are not appropriate and should be revised. We are currently examining this issue carefully and we have agreed to take it away for further consideration in the other place. There are good reasons for further consideration of this issue. In particular more detailed consideration is needed to address children who are not competent to consent, on grounds of both age and mental capacity. Further concerns are then raised about all persons, including adults incapacitated throughout their entire life. The changes to the consent system regarding these concerns will require considerable thought to ensure that not only children but all those who require exemption are provided for. Consideration will also need to be given to other pieces of legislation, such as the Mental Capacity Act 2005 and the common law governing children and consent.
I am happy to state clearly once again our commitment to find a way through each of these concerns. We shall take the issue away for further examination and revisit it in the other place. With that reassurance, I hope that the noble Lord will not feel it necessary to press his amendment.
The Secretary of State shall within four years of the coming into force of this Schedule, carry out a review of the law and practice concerning the inclusion in the birth certificates of donor conceived persons the fact of such conception.
The noble Lord said: My Lords, those of us who have followed the argument on whether a birth certificate should record the fact of a donor conception will
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I have very much in mind the admonition of the noble Baroness, Lady Royall, at the beginning about not repeating the arguments that I advancedat some length, I fearon Report. Then I asked that the HFEA should keep the matter under review, and I added that if the HFEA recommended that there should be a change in the law relating to birth certificates in practice, the Government could then make the necessary changes by statutory instrument. Both conditions were criticised by the noble Baroness, who said that the HFEA was not best placed to carry out a review in that area. She said:
Anyone reading the amendment will recognise that I have met those two requirements. It will now be the Secretary of State who will carry out the review, and the suggestion that a change in the law might be made by order has been removed. That there needs to be a review from time to time is extremely clear. There is widespread feeling that birth certificates should not connive in a lie. That was considered at some length by the Joint Committee, and we did not like the idea one bit that there should be an element of deliberate deception, as it were, connived at by the authorities.
There are those who feel strongly that the birth certificate should record the facts. My noble friend Lord Ferrers was very eloquent on that subject. However, there is the great difficulty that a large number of the parents of donor-conceived children believe that to make it public at this stage would play to the prejudices of a great many people and harm their childrens prospects in life. But they agreed that opinion might change as people become more and more aware of the capacity of the medical profession to allow parents to create children when it was not possible before and the idea of donor conception might become better understood and more tolerated. That is why it needs to be reviewed.
As I said then, I have been around for long enough to know that departments can keep things under review for an astonishingly long time without actually doing anything. I want to see something in the Bill. I had been led to believe that this amendment might be
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Earl Howe: My Lords, whatever the Ministers reply to this amendment, the motives of which I strongly support, I take this opportunity to thank her and the noble Lord, Lord Darzi, for the constructive and helpful way in which they have handled the Bill during its passage through this House, and for willingly agreeing to consider in depth so many of the ideas and proposals put forward in our debates. My thanks extend also to the Bill team, who have devoted much time to advancing the discussions that have taken place outside as well as within the Chamber.
The Bill has been improved in substantive and important ways, and I believe that our debates and the Ministers joint efforts have served to clarify a number of difficult questions that the other place will now take forward.
Baroness Howarth of Breckland: My Lords, I am assuming that the noble Baroness is unlikely to accept the amendment tabled by the noble Lord, Lord Jenkin, but I want to make two points about it. In some ways, I do not support this proposal being in the Bill, but it is crucial, as has been demonstrated throughout the debate, that before we move forward we must have some sort of framework in which to examine the issues and questions about these families. It is interesting that the science may have been debated on the Floor of this House, about which there have been some marginal differences, but the social science has been disagreed with seriously. All I ask is that it should be understood from the start that the review should be looked at in a social science framework, so that at the end some objective assessment can be made, rather than a whole load of opinion about what children and families require to develop appropriately, and what adults need in terms of understanding their genetic inheritance to ensure their health.
Lord Mackay of Clashfern: My Lords, I am glad to find that I am again on the same side as my noble friend Lord Jenkin of Roding after a small deviation earlier. It is important that something of this kind should be in the Bill. Apart from anything else the government amendments proposed to the law, which have been incorporated in the Bill, will certainly require amendment of the form of the birth certificate. There can be no question about that. Some review of the structure of birth certificates will be necessary before the Bill can be implemented.
I have made the point, so I shall not weary the House by making it again, that there are some cases in which donor conception will become apparent on the birth certificatenot expressly but by implication. For a minority of children, the fact of their donor
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Baroness Hollis of Heigham: My Lords, I also support the push of this amendment. Sitting on the pre-scrutiny committee, I found this one of the hardest issues. There were conflicting pulls and it was hard to know where the balance should lie. This was not about faith, beliefs or scientific background. It was a set of clashing considerations over, for example, whether the birth certificate should reflect the biologicalthat is, geneticparentage or, as many same-sex couples might wish, the social parentage of a child.
Secondly, where do the childs wishes come into play as against, possibly, the social parents wishes? That child may wish the certificate to reflect his or her social parents. That child may prefer, for whatever reason, the birth certificate to reflect his or her genetic parents. In some societies, where you need a full birth certificate for entry, there could be possible areas of discrimination or stigma that the child might find difficult to handle.
Thirdly, there is the issue of privacy. We all hope that parents will follow best practice and ensure that their children are aware of their origins, how much they have been wanted and so on. Yet some parents will not. I registered my own child at 10 days or whatever, but there was no subsequent evidence to back that up. The registrar took my word for it that I was the mother and that the person I said was the father was the father. That went on the birth certificate. How are you going to police it if a person should, wrongfully, seek to conceal the genetic origins? There is, effectively, a compulsory reporting system but, as far as I am aware, no way of monitoring the information put on that birth certificatenor perhaps should there be.
Given all of these problemsI do not know what I think about most of themI would welcome some sense that we can revisit this issue. Where the consensus lies on any of these issues may change over the next few years, as greater openness, frankness, transparency, scientific information and understanding of the ethical issues come to the fore. As a result, we may find that we can come to a view collectively, as a society and as a Parliament, which reflects a consensus that does not currently exist. If for that reason alone, I hope that if my noble friend cannot accept this amendment today, something similar will be introduced in the other place.
Lord Alton of Liverpool: My Lords, I too support the amendment of the noble Lord, Lord Jenkin of Roding, not least for the sorts of reasons that the
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As the future unfolds, the changing attitudes that the noble Baroness has rightly identified might well tilt in favour of genetic, biological information truthfully being recorded on a birth certificateI hope it will. We might also look at producing another document within whatever social arrangements obtain for bringing up a child. A social document can record other questionsperhaps the parents or those bringing up that child want to appear on that document. A social document alongside the birth certificate might be one way forward. I believe that we should not tamper with birth certificates and that they should be a true record of genealogy and lineage. Everyone is entitled to the best possible proof of their origins.
At the fag end of the Bills consideration, I remain implacably opposed to many of its provisions. That will come as no surprise to your Lordships House, but I too thank the noble Baroness, Lady Royall, and the noble Lord, Lord Darzi, for their unfailing courtesy and patience in dealing with many of the objections that I and others have raised.
Baroness Knight of Collingtree: My Lords, the noble Baroness, Lady Hollis, is absolutely right when she says the word of the mother or father is taken automatically when they register a birth. I am sure that there will have been cases when wrong information has been put on a birth certificate because it was believed that the mother or father was telling the truth and that it was an accurate record of the parentage of the child being registered.
One can make a strong case that feelings can be hurt by what is on a birth certificate, but once you deviate from the principle that you must put down the truth, you are in all sorts of difficulty. Once we say, to be kind to people and not to hurt their feelings, that we will allow a lie, or, that as the truth is not always told, the truth is not important, then we are really in trouble. It is often hard to face the truth in many instances. But this is an official record, and I support the amendment. Once we deviate, we really are in trouble.
Earl Ferrers: My Lords, I was getting on famously with understanding this amendment until the noble Baroness, Lady Hollis, stood up. She said that, on birth certificates, you might have to consider the parents interests and the childs interests. Surely the whole purpose of a birth certificate is to record the facts. I agree with my noble friend Lady Knight that you cannot get away from the facts. To use an extreme
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Baroness Barker: My Lords, throughout the course of this Bill, I have undergone a remarkable educational experience. The education has been confined not solely to science, although I now have an understanding of scientific matters I never knew existed, but to the social sciences as well.
Like the noble Lord, Lord Jenkin, I have paid attention to these matters and listened as fully as I can to the different views of the different parties. I congratulate him on turning up with a slightly new amendment; I do not wish to go back over the debates we have already had. Yet we have moved no further forward than was the case in 1990, when the great brains of people like the noble Baroness, Lady Warnock, tried to find an answer to this question. We simply have not done so. While many people will welcome the amendment as a force behind the department which will make it consider the issue, it is important to remember that for some others it is something to fear, something they will not want to see.
I state again that, although many of us share very deep concern that people should know their genetic identity, we are yet to be convinced that mandatory inclusion of information on birth certificates is the most effective way to ensure that that information ends up with those children. My concern is that the amendment attempts to address the issue in one way only, when that may not be the most effective way. I hope that, if there is any review, it is a very expansive review about the need of children to know who they are and how they get to find out.
Finally, I, too, want to place on record our thanks from these Benches to the Ministersthe noble Lord, Lord Darzi, has got a tremendous first innings under his beltto the Bill team, who have been exceptionally generous with their time, and to the scientific noble Lords for giving us all some splendid tutorials along the way. To those who disagreed with what I had to say, I found their contributions remarkably helpful at times.
Baroness Royall of Blaisdon: My Lords, these are indeed complex issues. There has been considerable debate during the passage of the Bill on the issue of recording the fact of donor conception on birth certificates. As I said during Report, the Government fully recognise the importance of donor-conceived children being aware of their origins and we have a policy of openness in that area. We are taking a number of steps in this respect.
The Department of Health is working closely with the Donor Conception Network to support projects
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